First patient to get stem cell therapy is identified
By Rob Stein, Wednesday, April , 4:14 PM
washingtonpost.com
In the six months since scientists announced that they had infused millions of cells made from human embryonic stem cells into a patient, the identity of the recipient has been shrouded in secrecy.
In recent weeks, rumors began circulating in Internet chat rooms that details about the closely guarded experiment were finally about to be revealed.
Now, family members and friends have confirmed the volunteer is a 21-year-old Alabama nursing student who was paralyzed from the chest down in a September car crash. He remains in good spirits and hopeful about recovering, they said.
“Things are going really good,” Angela Atchison of Millry, Ala., said of her nephew, Timothy J. Atchison, in the first public acknowledgment of his identity and condition.
Timothy, known as T.J., was attending the University of Alabama College of Nursing when his car crashed Sept. 25, his aunt and father said. He agreed to let doctors inject more than 2 million cells made from stem cells into his spine 13 days later at the Shepherd Center in Atlanta, according to his aunt and a family friend.
The experiment is the first carefully designed attempt to study an embryonic stem cell therapy, It is seen by both supporters and opponents of embryonic stem cell research as potentially pivotal to the future of the research, which proponents say could revolutionize medicine and critics denounce as immoral.
T.J. did not respond to repeated calls and messages seeking an interview. The Shepherd Center and the Geron Corp. of Menlo Park, Calif., which is sponsoring the study, declined to comment.
But Angela Atchison and Tory Minus of Millry, a family friend, acknowledged he was the volunteer during telephone interviews with The Washington Post and in blog postings.
The trial is primarily assessing safety, but doctors are also testing whether the cells restore sensation and movement. It is too soon to tell whether the cells were helping T.J., Angela Atchison said.
“They said it would be about a year before they’ll know if there’s any difference — if it takes,” Angela Atchison said. “We’re just hoping and praying that it works.”
T.J.’s father, Timothy Atchison of Millry, said his son had maintained a positive attitude, beginning when T.J. was in the emergency room after the accident and understood how seriously he was injured.
“He said, whatever the Lord leaves him with he’ll do the best he can with it,” Timothy Atchison said in a telephone interview Monday. He would not directly acknowledge that his son was in the stem cell study, but confirmed many details, including his treatment at the Shepherd Center.
“I’ll put it this way, they tested a lot of folks and only one made the cut,” he said during another interview Tuesday. “You can read between the lines.”
In fact, the timing and location of T.J.’s treatment is what made him a candidate to become the first patient to start the historic study.
After many delays, Geron had finally persuaded the Food and Drug Administration the previous July to allow the company to study 10 patients. Geron spent months training special teams of doctors at seven secret sites around the country so they could be ready to act quickly. The teams then had to wait for a patient who met the study’s strict criteria — someone who was paralyzed from the chest down within the previous two weeks.
Surgeons planned to use specially designed equipment to infuse into the first patient’s spine about 2 million “oligodendrocyte progenitor” cells, which Geron scientists had created in the laboratory from embryonic stem cells obtained from days-old embryos leftover from fertility treatments. The hope is that the cells will form a restorative sheath around the damaged spinal cord. In tests in hundreds of rats, partially paralyzed animals regained the ability to move, Geron said.
The study is being closely monitored by scientists eager to advance the research from the laboratory to the clinic, as well as by patients and patient advocates hoping for cures. Although the cells have been tested in animals, and some clinics around the world claim to offer therapies using human embryonic stem cells, the trial is the first vetted by the FDA to evaluate the strategy in people.
But in addition to being criticized by those with moral objections to research using the cells because human embryos are destroyed to obtain them, the study has also raised alarm among some proponents of the research. Some argue that the experiment is premature. Others question whether it is ethical. Many fear that the trial risks becoming a major step backward if anything goes wrong such as the cells causing tumors — or even if there is no sign that the cells help.
Spinal cord injuries are also highly unpredictable. Patients often improve on their own, which makes gauging whether the cells had any effect dicey. Some also wonder whether trauma victims who have so recently suffered a life-altering injury will agree to the experiments out of desperation without fully understanding the risks.
Supporters are confident that the study had been adequately vetted. The demanded extensive experiments in the laboratory and on animals to provide evidence that the cells hold promise and are safe to test in people. Even if problems occur, research showed that the cells do not leave the site of the injury, indicating patients would not experience negative effects, Geron said. Each subject is assigned an independent advocate to ensure that volunteers fully understand their decision.
Neither his father nor his aunt discussed T.J.’s decision-making process. His father said T.J. has remained upbeat.
“Anyone is going to have their moments where they are going to be down and out and he’ll see people swimming and do things like that that everyone can do but he can’t do. You’ll always have those moments. He’s had those. But if you ever met him you’ll walk away with a positive impression,” Timothy Atchison said.
He added, however, that the family was trying to get its insurance company to pay for exercise equipment for T.J.
“We live in an area where you can’t just run down to a therapist. We need this equipment at home. It’s a struggle,” he said.
The family had gotten little information so far from Geron about whether the therapy might be helping, he said.
“We don’t know, to be honest. The corporation — they do everything’s that done on him — the research, whether we’re getting the right answer or not getting the right answer. We don’t get to see that,” Timothy Atchison said.
In the meantime, T.J. has learned to drive a special car that he can operate without using his legs, his aunt said.
“It’s a struggle to get in and out of the car with his wheelchair but he’s doing really great,” his aunt said. “He’s just a happy person.”
On her blog, Minus, the family friend, recounted T.J.’s experience.
“Almost six months ago, my mom called shortly before 8 o’clock on a Saturday morning to tell me that a close family friend named Timothy (or T.J., as most refer to him) was involved in a terrible automobile accident. Mom could barely get the words out. T.J. had suffered a severe injury to his spinal cord and was being air-ambulanced to a regional medical center some 60 miles away,” Minus wrote in a posting dated March 23.
Despite extensive surgery and “meticulous care,” Minus wrote, T.J. never regained sensation below the chest.
“But typical T.J., he never gave up hope that one day he would walk again,” Minus wrote. She described how his parents contacted the Shepherd Center and he was transferred there within 24 hours.
Minus said she was hoping to write a book about the case. “I’m working on his story,” she said, adding she had found a literary agent. G. Mac Mackie, the Charlotte, N.C., agent, also declined to comment.
“We’re taking it slowly,” Minus said. “Anybody’s who starting out knows you have to build your audience and gain interest,” she added.
Minus also declined to say any more about T.J.’s condition. “I’m really not going to comment in terms of any progress being made or anything like that,” she said. |
